Re: Scaphocephaly Experience

[Guest guest]

Hi :

I'm happy Christie & Dustie gave you such good info.. Don't know if

Christie also pointed in to " Lorenzo's " " Before & After DOCband "

pictures too or not, but he also rec'd good correction of his

scaphocephalic shape.

Where are you located?

Debbie

> Thanks to Christie and Dustie, I think I have a better idea of what

> is going on with my 3 mo old daughter.

>

> If anyone has experience with scapho, I'd love to know your

> experience. What are you doing for treatment? If you knew then what

> you know now, what would you do?

>

> Looking at the severity charts, I would say my child is a 3 (severe)

> on all perspectives.

>

> We have an appointment with a craniofacial surgeon in 2 weeks.

>

> Thanks.

>

> Mom to Hardy (2.5) and twins, Blythe and Charlotte (3mo)

[Guest guest]

,

Welcome to the group...you and I are experiencing very similar

situations. One of my twin sons has just been diagnosed with

scapho. Unfortunately he is 12mths or (10.5mths adjusted age for

prematurity) and is just now starting treatment. He was seen today

by a neurosurgeon and we are waiting to hear from him tomorrow about

the results of his x-rays. Our surgeon took x-rays to rule out

craniostenosis (not spelled correctly), which is a premature fusion

of the sutures.

For scapho kids the sagital suture sometimes will fuse early which

can cause scapho. However, I feel that my son has positional plagio

not cranio b/c he was twin A, had utero constraint, born premature,

and was a NICU baby. Hopefully the x-rays will confirm my personal

diagnosis. If the x-rays show that he has positional plagio/scapho

then we will begin banding in the next few weeks. He will be in a

band for at least 3mths but could be banded until 18mths b/c his

treatment is starting so late.

As for your child...I think you will have great success with

correcting her head shape b/c you and your ped have been so proactive

and caught this so early in her life. I only wish our ped would have

disclosed his medical notes to us so we could have made these

decisions to treat Jakob's scapho earlier in life....but that didn't

happen...so we will do what we can now.

I hope this helps!

Take care and keep us posted,

Jen and the gang...

Jakob and (6/17/03)

> Thanks to Christie and Dustie, I think I have a better idea of what

> is going on with my 3 mo old daughter.

>

> If anyone has experience with scapho, I'd love to know your

> experience. What are you doing for treatment? If you knew then what

> you know now, what would you do?

>

> Looking at the severity charts, I would say my child is a 3 (severe)

> on all perspectives.

>

> We have an appointment with a craniofacial surgeon in 2 weeks.

>

> Thanks.

>

> Mom to Hardy (2.5) and twins, Blythe and Charlotte (3mo)

[Guest guest]

,

graduated March of 2003. Knowing what I know now, I would have

done exactly what I did. I treated her Scaphy with what is called a

Bi-Cal DOCBand. What it did was apply gentle pressure to the front

and back of her head and encourage growth to the sides. It didn't

have velcro on one side like the others. She had rubber bands that

had to be changed every 7 days. We found out at our seminar at CT

that it takes like twice as long to make one of these bands than it

does to make the more common DOCBands to treat plagio or Brachy. I

will tell you that my daughter started out with a STARLight made by

Orthomerica. At the time it was brand spanking new to treatment.

We tried 2 of them and they both were to big and didn't work for

treatment (my experience only). If your going to use the STARLight,

I would suggest making sure the ortho has experience with that

particular band. They can be tricky and Scaphy is very uncommon, so

there's not a lot of experience with it.

Since being on this board for 1.5 years now, all of the Scaphy

babies I've seen come through here, (ok only 2 besides my daughter)

all have used the DOCBand.

Good Luck and if I can do anything to help, just let me know.

Dustie

> Thanks to Christie and Dustie, I think I have a better idea of

what

> is going on with my 3 mo old daughter.

>

> If anyone has experience with scapho, I'd love to know your

> experience. What are you doing for treatment? If you knew then

what

> you know now, what would you do?

>

> Looking at the severity charts, I would say my child is a 3

(severe)

> on all perspectives.

>

> We have an appointment with a craniofacial surgeon in 2 weeks.

>

> Thanks.

>

> Mom to Hardy (2.5) and twins, Blythe and Charlotte (3mo)

[Guest guest]

Hi ,

Would you keep us posted on how your appointments and learnings go

as far as yur daughter's scapho goes? We could use more scaphyo

experiences here at the group since only a few members have had

experience with it. It would be invaluable to add whatever you can

contribute to the general group knowledge.

Looking forward to hearing about your daughter's consult,

Christie (Mom to Repo'd Remy)

-- In Plagiocephaly , " hardysmom "

<stephanie_bonebrake@m...> wrote:

> Thanks to Christie and Dustie, I think I have a better idea of

what

> is going on with my 3 mo old daughter.

>

> If anyone has experience with scapho, I'd love to know your

> experience. What are you doing for treatment? If you knew then

what

> you know now, what would you do?

>

> Looking at the severity charts, I would say my child is a 3

(severe)

> on all perspectives.

>

> We have an appointment with a craniofacial surgeon in 2 weeks.

>

> Thanks.

>

> Mom to Hardy (2.5) and twins, Blythe and Charlotte (3mo)